Leder draws on literary examples, clinical and philosophical sources, his medical training, and his own struggle with chronic pain. He levies a challenge to the capitalist and Cartesian models that rule modern medicine. Similarly, he looks at the root paradigms of our penitentiary and factory farm systems and the way these produce distressed bodies, asking how such institutions can be reformed. Writing with coauthors ranging from a prominent cardiologist to long-term inmates, he explores alternative environments that can better humanize—even spiritualize—the way we treat one another, offering a very different vision of medical, criminal justice, and food systems. Ultimately Leder proposes not just new answers to important bioethical questions but new ways of questioning accepted concepts and practices.
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The Distressed Body
Rethinking Illness, Imprisonment, and Healing
By Drew Leder
The University of Chicago PressCopyright © 2016 The University of Chicago
All rights reserved.
Rethinking Illness: Philoctetes' Exile
Sophocles' play Philoctetes is set on the desolate island of Lemnos. The protagonist has lived there alone for ten years, devoid of companionship and the comforts of home. It is illness that has brought him to such a state. Bitten by the snake that guarded the sanctuary of Chryse, Philoctetes has sustained a foul-smelling, suppurating, agonizing foot wound. His companions, on the way to battle and unable to bear his groans, abandon him on Lemnos. The play begins with the arrival there of Odysseus and Neoptolemus, Achilles' young son. But they come only under compulsion; the Greeks have learned by prophecy that they need Philoctetes and his bow before they can conquer Troy.
Through a causal chain of events, illness has given rise to an exile. But the play, for this reader, suggests something more: that illness is an exile, a banishment from the customary world. Such a metaphoric equation may have been far from Sophocles' intent. Yet his text provides us with a rich set of images to commence a phenomenology of illness and therefore to start off this book. The wild and isolated Lemnos evokes the distant country of the sick that we all may one day come to inhabit.
Boy, let me tell you of this island.
No sailor by his choice comes near it.
There is no anchorage, nor anywhere
that one can land, sell goods, be entertained.
Sensible men make no voyages here.
Yet now and then someone puts in. (lines 300–305)
To speak of illness is not the same as to speak of disease. The latter term refers to an entity defined by means of medical categories. Were a contemporary physician present, Philoctetes' problem might be diagnosed as a chronic localized infection, perhaps actinomycosis, extending into the bone. (I thank Dr. Richard Selzer, the surgeon-writer, for this hypothesis — I'll speak more of him in chapter 3.) As disease, the condition is objectified, identified with an anatomical lesion or disordered physiology. Implicit reference is made to etiological agents, epidemiological distributions, predictions of outcome, diagnostic and therapeutic techniques.
The term illness here refers instead to suffering and disability as experienced by the sick. To fall ill is not simply to undergo a physiological transformation but a transformation of one's experiential world. (I here refer in endnotes to a few of the many works on the phenomenology of illness. In the main body of this chapter, I confine myself largely to Sophocles' own footnotes, so to speak, concerning Philoctetes' foot wound.) When seriously ill, space is constricted, time slows to a stop, the future grows uncertain, habitual roles are abandoned. Concerns that once were paramount now seem trivial, and vice versa. It is incumbent on physicians to be aware of the experienced illness that lurks behind the disease; it is the illness, after all, for which the patient seeks relief. Yet, on the nature of illness, medical journals have little to say and Sophocles much.
As we'll see in chapter 2, medical knowledge is so ubiquitous in our modern world, as solicited on Internet, in chats with our friends, and through visits to practitioners, that our experience of illness is often vectored by clinical interpretations. The distinction between "illness-as-experienced" and "disease-as-diagnosed" can thus become complex and provisional. But Lemnos has no physicians and hence no "diseases." The play allows us to examine illness in the raw. We find that the distress(to be "stretched apart") associated with serious illness involves a threefold exile: from the cosmos, the body, and the social world. Let's examine each in turn.
Philoctetes' illness first involves a falling out with the cosmos, the universe at large. He has violated the divine order by coming too near Chryse's shrine. Inflicted by a guardian-snake, the "sickness is of God's sending" (line 1326). Throughout history, sickness has been associated with divine punishment, from the Black Plague of the fourteenth century to the AIDS epidemic. The very word pain arises from poine, the Greek word for "punishment." This association, pernicious as it may be, has roots deep within the illness experience. The person who develops a serious disease often feels he or she must have done something to deserve it. Pain is the very immediate bodily sense of something bad or wrong. It is natural, then, to look for its origins in something bad or wrong about the sufferer. This is not restricted to the religious enthusiast concerned with being a sinner. The cancer patient, surveying her smoking history or "cancer-prone" personality, may feel the same sense of sickness-as-retribution. To be ill is to feel oneself out of joint with the cosmos, an exile from the harmonious totality of the world.
But illness can also raise a different specter: that the world itself is not, after all, a harmony. To the chorus of Sophocles' play, Philoctetes is no sinner, his illness, no proper recompense.
But I know of no other,
by hearsay, much less by sight, of all mankind
whose destiny was more his enemy when he met it
than Philoctetes, who wronged no one, nor killed
but lived, just among the just,
and fell in trouble past his deserts. (lines 680–85)
He intruded on Chryse's province unwittingly, without malicious intent. As such, Philoctetes' wound has a senseless quality that may remind us of the biblical Job's unmerited tribulations. Here Philoctetes is the victim of a chance occurrence, and then the unfolding of inexorable necessity.
So it is for the sick, to whom the universe can appear lacking in elementary kindness or justice. In the midst of a happy and successful life, on the afternoon of a glorious day, we may suddenly feel a pain, and that pain may lead to tests, and those tests reveal the onset of a disabling, progressive, even fatal, malady. Where then is the justice, where the meaning? Sickness can shatter all faith in an ordered universe. This sense of the arbitrariness of illness can bring its own form of suffering as or more powerful than that introduced by the punishment model. If illness is a form of retribution, at least justice remains operative and atonement can restore health. But what if one is not simply out of joint with the world, but the world itself is out of joint? This sense plagues Philoctetes, compounding his physical agony with rage and despair:
[The Gods] find their pleasure in turning back from Death
the rogues and tricksters, but the just and good
they are always sending out of the world.
How can I reckon the score, how can I praise,
when praising Heaven I find the Gods are bad? (lines 447–52)
While this is not Sophoclean theology, it is psychologically acute. When we are seriously ill the gods can seem bad or nonexistent. We no longer feel at home in such a universe. It appears, like Lemnos, "a shore without houses or anchorage" (line 221).
If illness can effect an exile from the cosmos, so too from our small piece of it, the body. In health, we simply are our body. We gaze, speak, move our way through the world, taking for granted our physical capacities and all they render available. The body is largely transparent, simply who we are in action. But in illness the body surfaces as strangely other. It asserts an autonomous life, refusing to obey our commands. For Philoctetes, "neither of foot nor of hand nor of anything is he master" (line 860). Those organs that once were compliant, the very agents of one's identity and capacities, for the sick person are now felt an external threat. A chasm opens up between Philoctetes and his "habitual body" with its range of predilections and abilities. Now he is dis-abled. Philoctetes' foot becomes a thing he must laboriously drag behind, and the cause to him of unspeakable pain. He longs for nothing more than escape, whether through sleep, death, or amputation.
By God, if you have a sword, ready to hand, use it!
Strike the end of my foot. Strike it off, I tell you, now. (lines 748–49)
But the body cannot simply be cast off as we would an offending object. The ill person knows better than the complacently healthy of the inescapable force of embodiment. Here then is the paradox of illness: we are brought home to a heightened awareness of the body, but it is a body in which we no longer feel at home. As we will see in succeeding chapters, medical treatment can often exacerbate rather than heal this sense of division: the body is objectified, examined, probed and needled, scanned and measured, while the patient must be patient.
Illness and disability are an exile not simply from the cosmos and the microcosmos of the body, but from the social world that mediates between them. When we fall sick, we are banished from the daily round of roles and duties on which so much of our conventional identity is based. From our bedroom window we hear the bustle of the street, the sound of people on their way to work, but now as if from a great distance. The world is there just as it was the day before, with one exception — we are no longer a part of it. We dwell in our bed, the sole inhabitants, like Philoctetes, of a far-off island. This banishment is not simply the result of physical immobilization but of a shift within our framework of meaning. We are no longer a party to the concerns that absorb the outer world. The tenuous condition of our physiology has taken precedence. Sophocles' play well represents the solipsism of the ill. Its protagonist knows nothing of the momentous events taking place in Troy. While gods and heroes battle, the destiny of great city-states hanging in the balance, Philoctetes remains oblivious for ten long years. His life is bounded by an injured foot and private rage.
The ill person sometimes compounds this isolation through a self-imposed exile. When sick, we may purposefully shun the company of the healthy. Their vibrant energy seems almost repugnant, a taunting reminder of all we have lost. Then too we may wish to conceal our own reduced state. The sallow look, unpleasant odors, and physical dysfunctions of illness can lead the sufferer to a shamed seclusion.
Even when standing in the midst of others, the ill person, to some extent, stands alone. The healthy may be solicitous, yet cannot fully understand, alleviate, or share in the suffering. The sick one is singled out, by the long-term threats posed by serious illness and by the immediacy of present pain, a private sensation. While sight and hearing reach out to a common world, pain is largely enacted within an interior theater. Moreover, lacking any referential object in the world, pain is difficult to translate into speech, a theme I will explore more in the next chapter. It can, in fact, actively destroy speech; Philoctetes is reduced by a severe attack to cries and shrieks.
Because illness renders communication so problematic, the latter can take on heightened value for the ill. Far from shunning others' company, the sick person may seek it out with desperation. In Philoctetes' words:
I have been alone and very wretched,
without friend or comrade, suffering a great deal.
Take pity on me; speak to me; speak,
speak if you come as friends.
No — answer me.
If this is all
that we can have from one another, speech,
this, at least, we should have. (lines 227–31)
Yet the plea of a Philoctetes does not always meet due response. After all, he has a repulsive effect on others. Odysseus explains why Philoctetes' own comrades-at-arms abandoned him on Lemnos:
We had no peace with him: at the holy festivals,
we dared not touch the wine and meat; he screamed
and groaned so, and those terrible cries of his
brought ill luck on our celebrations; all
the camp was haunted by him. (lines 6–10)
Stray sailors who have wandered onto the island have offered Philoctetes scraps of food and cast-off clothes, but none of them will give him passage home (lines 308–11). His wound gives off a great stench and leaks a black flux of blood and matter. His personality has been twisted by long frustration. The screams and moans of his agony are hard to bear. Who would want him as a companion?
Most of us share to some degree a secret, perhaps subconscious, wish to avoid or banish the ill. Rather than condemn such feelings we need to recognize them as natural. For illness can be contagious, not only physically but experientially: the very presence of the sick person threatens to infect the world, reminding the healthy of all they would most like to forget. Here is a specter of the extremes of pain, ugliness, and helplessness to which the human being can fall prey. We are recalled to the acute vulnerability of embodied life and the inevitability of our own death. It is natural to wish to escape from such thoughts, perceptions, and feelings. We thus find ways to quarantine the distressed. Hospitals, nursing homes, mental institutions can all serve such a function. Nor must quarantine take a physical form. It is there in the cheery smile we put on with a dying friend, the impersonal professionalism of her attending physician, coupled with a subtle refusal to touch the sick person (touch is the focus of chapter 3).
Yet if, as I have suggested, illness is exile, to compound the exile is to compound distress. The world disruptions effected by illness are hardened into place through the reactivity of others. This is true for Philoctetes. The primary cause of his isolation and rage is not physical pain per se, but the way his companions have cast him off:
Think, boy, of that awakening when I awoke
and found them gone; think of the useless tears
and curses on myself when I saw the ships —
my ships, which I had once commanded — gone,
all gone, and not a man left on the island,
not one to help me or to lend a hand
when I was seized with my sickness, not a man!
In all I saw before me nothing but pain;
but of that a great abundance, boy. (lines 276–84)
Even the strong-willed Philoctetes is reduced by illness to childlike need: he begs Neoptolemus not to leave him alone (lines 808–9). If abandoned at a time of acute vulnerability, we feel pulled apart (di-stress) from others, and pressed inward (stress) on our solitary pain.
For a more contemporary example, we might reflect on the treatment of those with AIDS. Especially when the disease was first manifesting, clinical suffering was often intensified by social exile. This reaction toward AIDS patients took an exaggerated form for several reasons. First, groups in the United States initially associated with the disease — homosexuals, IV drug users, Haitians — were already viewed as marginal members of society. It is then easier to turn away from, or vilify, their suffering. The primary perceived modes of transmission, needles and gay sex, were often regarded as illicit. Hence, some portrayed AIDS as a form of divine retribution, illness-as-punishment. Social exile is justified by reference to an exile from the cosmic order. Moreover, full-blown AIDS began as an almost uniformly fatal disease, spreading at an epidemic rate with no cure in sight. Widespread fear was thus also a factor intensifying the urge to banish the ill.
Excerpted from The Distressed Body by Drew Leder. Copyright © 2016 The University of Chicago. Excerpted by permission of The University of Chicago Press.
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Table of ContentsIntroduction
Part 1 Illness and Treatment: Phenomenological Investigations
1 Rethinking Illness: Philoctetes’ Exile
2 Rethinking Pain: The Paradoxical Problem
3 Rethinking Touch: How Then Does It Heal?
4 Rethinking Pills: Fantasies, Realities, Possibilities
5 Rethinking Clinical Practice: Toward a More Materialistic Medicine
Part 2 Medicine and Bioethics: Hermeneutical Reflections
6 Rethinking Diagnosis: The Many Texts of Medicine
7 Rethinking Bioethics: Questioning Our Answers—and Our Questions
8 Rethinking Organ Transplants: Whose Body, What Body?
Part 3 Discarded and Recovered Bodies: Animals and Prisoners
9 Rethinking Factory Farms: Old McDonald’s Had a What?
10 Rethinking Imprisonment: The Life-World of the Incarcerated
11 Rethinking Prisons: The Enlightened (and Endarkened) Prison
12 Rethinking Prisoners and Animals: “They’re Animals” and Their Animals
13 Rethinking Humans and/as Animals: The Art of Shape-Shifting